Support for Autism Parents Everywhere

When It Falls Apart

It has been a long time since I’ve written anything. Life for us has turned into a never-ending series of challenges, challenges unlike any we’ve ever faced.

As some of you know, I was hospitalized in Michigan right before Christmas for almost two weeks in an intensive program to try to cure my 24/7 migraines. This worked… for a while. Even with this period of decreased head pain, the aftermath of the previous year – most of which was the product of my own horrible decisions – replaced it. Then within a few weeks, the headaches returned, and everything merged into something that left us surviving from day to day.

Then it got worse. Much worse.

In late February, Dale Jr. was complaining that his right arm hurt. We thought he had perhaps fallen on the playground at school or while playing with our friends’ kids. But it didn’t improve, and he certainly wasn’t faking it for attention. He couldn’t put weight on his arm and was constantly guarding it against his body.

So we took him to the pediatrician, who seemed convinced that we were overreacting. Dale Jr. passed a full range of motion test. But the pediatrician said just to be on the safe side that he’d order an X-ray to see if perhaps he had fractured his clavicle or had some other kind of injury that might not readily show up during an exam.

What ultimately showed up was something we never could have expected, something that would instead completely change our lives.

The X-ray detected a small mass on his right first rib, enough outside the focus of the X-ray to be unable to get a good look at it. So they immediately called him back in for a CT scan of that area. Within no time, they called us – at off hours on a Saturday – with the results. They weren’t good, but they couldn’t be more specific than that. We were told to immediately report to the North Carolina Children’s Hospital for direct admission to the Pediatric Oncology floor.

We heard the word ‘oncology’ with horror and disbelief. All we could do was throw together some luggage and leave within an hour, having no idea what was going to happen next.

The next days were like being cast into a cauldron of denial, desperate hope, and abject fear. We felt like we were in a bad dream we would wake up from any minute. We fell into that trance of just getting from hour to hour.

We took walks around the Pediatric Oncology floor. He played in the play areas, rode tricycles up and down the hall, and chatted up the nurses, doctors, and the other kids, like nothing was really going on. In time, he began to ask questions about why he couldn’t eat, why they were doing so many tests, why he had to have all these things stuck into his arm. He worried about the other children there too weak to stand and walk on their own. He asked why they had little or no hair. We never figured out whether he feared that would be him someday. I know we did.

We tried to shelter him from all this fear and the complete unknown we all faced. But who can really stand against something like this.

After several days in the hospital, the tests came back that he had multiple areas in his chest and abdomen that were growing abnormally. If it came back positive for some form of cancer, it would be classified as metastatic, and his odds of survival would involve numbers we would not be able to speak aloud. There were other things it could be, each with increasingly better odds for getting to a place beyond this nightmare. We knew it would be something; at that point we just begged for him to be able to live.

We had to wait the better part of another week for the pathology results. We paced the floor. We barely slept at first and then just started collapsing after that. We begged for him to be shown mercy. We begged to be allowed to take this from him and bear it for him.

We walked into the exam room together to hear whatever the doctor had to tell us. As I crossed the threshold of that door, I remembered all too clearly the walk, almost six years ago to the day, into a doctor’s office to hear the diagnosis of autism for our J-Man. That day felt like the end of the world, though in hindsight I now know it wasn’t. The more we learned from that day on, the more experience we got, the more we realized that so much wonder and beauty would permeate our lives. I clung to that for dear life.

This time the stakes were infinitely higher. Autism will never be cancer. But over these years, our J-Man had already taught us how to bring forth the very best of who we are. I never could have imagined how much we would need what he has given us. I had to believe that we would again rise to whatever was coming next.

The results came back that Dale Jr. has Langerhans Cell Histiocytosis (LCH). It is extremely rare (1 in 200,000) and is currently a lifelong condition, but the treatments are relatively manageable and the outcomes are good. The doctors said they actually cheered. It could have been so, so much worse, and they had feared it was. We all exhaled.

It is an unusual disorder in that it has properties both of cancer and an autoimmune disorder. In the upside-down world of oncology, this really was the best possible outcome for him. Other cancers could have meant survival rates as low as 25% or worse. With LCH, when caught this early, if he responds positively to the treatment protocols, his future prospects are excellent.

But in the meantime, he must get weekly chemotherapy treatment for at least 12 weeks. If the resulting scans show that his lesions have adequately shrunk or disappeared, then he can go to monthly treatments for another nine months or so, for a total of a year of treatment. After that, he’ll get regular scans, and we just pray it never comes back.

Because of all this, we had to withdraw him from preschool. He was devastated. They have rallied around him even in his absence, lavishing love, gifts, and their sincerest thoughts and prayers upon him. We went back to his school for a brief visit one day, and they treated him like a rockstar coming home. The church the preschool is part of has cared for us like their own family.

We recently learned that after his first six treatments, his lesions are indeed shrinking. He crossed the first major hurdle on his path back. He should get to start kindergarten on time in August. Hope is being reborn.

We are so proud of him. He has faced all this with amazing bravery. He has a port in his chest, scars from two surgeries, and has all sorts of things done to him weekly. Yet, he takes it all in stride. He asks lots of thoughtful questions. He comes to us and talks about being afraid, with no shame or self-judgment. We are basically nervous wrecks. He is a superhero.

We worry that he is having to grow up far too fast. He should be back in preschool playing on the playground and telling jokes with his classmates. But he has accepted this with grace, and I imagine someday it will serve him well.

We look at our two boys and realize something extraordinary about them both. They teach us time and time again how to be brave in the face of challenge and adversity. They show us about kindness in the midst of fear and uncertainty. They take steps forward into the unknown every day. Do the next right thing; that’s all. Worry about the rest later.

They bring out the best in others. People love them. They each call forth something deep and beautiful from within everyone they meet. We face many hurdles ahead, but we can most certainly be grateful for this. They are already building the community they need, and we need, to thrive in the months and years to come.

In his minimal, halting speech, our J-Man recently put together the words ‘family’ and ‘together’. Dale Jr. tells us how much he loves us at least a dozen times a day. Out of the shattered fragments our lives had become, they are living out what is most important. And I am their pupil once again.

I am not sure what to write and which words will give you comfort. I have just hugs.

My son was diagnosed with mild autism and that’s how i came to find your blog in the net. your blog and other blogs of parents are a blessing,comfort and guide to so many people.

i am trying homeopathy and OT for my son.I searched homeopathy in your site but could not see any reference. Please don’t ignore homeopathy i insist please.I am not advocate of homeopathy but we want something which can lessen some of the stress/fears that kids go through.
i know homeopathy has been branded as placebo effect.But it does no harm to try it. I was inspired by the blog in impossiblecure.com. Please give homeopathy a try or i would suggest to first try homeopathy for your migraine and if you find any relief, please try it for your sons.

Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone’s stories during the month and highlighting some on my Facebook page.

My 21 mos old son is showing signs of autism and although his screening isn’t until Thursday I know in my heart. I fell into dark hole while scrambling and scouring online for the past four days and found your blog. You are an inspiration and comforting. I have need to connect to other parents with autistic children and talk about what this will mean for us. I am in Los Angeles and if you or anyone here would be kind enuf to talk I am at goby42@gmail. Thank you and I will pray for continued good news for jman and dalejr.

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If you went looking for something on my previous blog - Both Hands and a Flashlight - you might have been a little surprised to end up here. After much deliberation, I've decided to combine my two sites. So my new home is here at I Am An Autism Parent. Welcome!